Struggling type 2

[Diabeticem2]

Hi all. I was diagnosed with type 2 diabetes coming upto 2 months ago now. I’m only 25 and so it’s been a huge shock as like every healthcare professional keeps telling me I’m far from the usual ‘body type and age’ etc. my hba1c was really high at diagnosis being 126 mmol and I’m currently taking 160mg gliclazide and 1500mg of metformin a day and know I’m going to be moved to jardiance when I have consistent single figure blood sugar. I’m really struggling with my levels especially in a morning. I’m waking up around 14 no matter what I do. I’m trying to stick to under 130g carbs per day but have been coming in at under 100g although I feel like regardless of wether I’m under 100g or have a day where I’ve just had enough and eat whatever my levels always seem to be the same unless I literally starve myself and then I manage to get to around 7 but that’s obviously not a good thing to be doing.

Just feeling really fed up, not sure whether I need to try and cut carbs out to even under 50g just not sure. I struggle to have consistent meal times too as a mum to a 2 year old and as someone who works until 8pm I can’t eat my evening meal until usually around 9pm. And I’m then that exhausted from the high levels that I’m struggling to keep awake after 10pm so can’t really move much before going to sleep.

Not really sure what I’m looking for in posting this I guess I just needed to rant somewhere.

 

[everydayupsanddowns]

Sorry to hear how difficult you are finding things @Diabeticem2

Just beginning to wonder on what basis they concluded you were T2 at diagnosis, since lots of factors in your clinical presentation are atypical of classic T2.

Was it mostly because you were not a child? T1 (and other types of diabetes) can come on at any age, but some non-specialist HCPs retain the misunderstanding that T1 is only diagnosed in children - when in fact 50% of cases are diagnosed in adulthood, including right up to 50s, 60s, 70s etc.

Were any checks made for diabetes antibodies at diagnosis? Was your cPeptide measured? Gliclazide works by encouraging the pancreas to release more insulin, but if your immune system has destroyed most of your beta cells, there’s nothing for it to work on.

Were you losing weight without trying before your diagnosis?

Either way, it doesn’t look like Gliclazide is working well for you. I wonder if you could ask about trying something else.

Make sure they know that you’ve significantly reduced your carb intake, and how ineffective the glic is being.

 

[JimmyBlue]

@Diabeticem2 so sorry to hear about the problems you are having. While I am older than you by nearly 40 years, I too was considered a non-typical diabetic. My weight, BMI and waist were normal and my fitness levels were fine. I found that my diabetes nurse was happy to agree to other tests just in case my diabetes was caused by other issues, not least because I went through very large and rapid weight loss (circa a stone in about 1 month). It may be worth having another chat with either your doctor or diabetes nurse and explain that you are concerned that things are not improving even with the medication and see if they can do some additional tests. I had scans of my pancreas, liver and kidneys as a well as a Gastricendoscopy.

 

[rebrascora]

Hi and welcome from me too.

Sorry to hear you are struggling as much as you are.

I too would be asking why they think you are Type 2 and what if any tests they have done to rule out Type 1? If they say you didn't have ketones then that in itself is not an indication. I am Type 1 (diagnosed at 55yrs old and initially assumed to be Type 2) and did not develop ketones. If it is because you had gestational diabetes, again, that is not specific to Type 2.
The tests you need to ask for are a C-Peptide test which measures the amount of insulin your pancreas is able to produce and antibody tests because Type 1 diabetes is an autoimmune condition where your immune system mistaken targets and kills off your insulin producing beta cells in the pancreas. The fact that the oral medications and dietary changes are not working effectively also indicates that you are not Type 2 and you need to push for Type 1 testing.

It would also be wise to get some Ketostix so that you can test your urine for ketones if your levels are persistently mid teens or above. Diabetic KetoAcidosis (DKA) can develop very quickly if you get to a situation where your body is not able to produce enough insulin to prevent you blood becoming acidic and toxic and you should read up on the symptoms of DKA so that you know what to look out for. It poses a much more serious and sudden risk to your health and indeed can be life threatening, than the long term risks of developing diabetic complications. Being able to test for ketones will enable you to keep yourself safe and know if/when you need to seek urgent medical attention. You can buy them online or over the counter for £5-£8 for a pot of 50 if your nurse won't prescribe them, but I would push for a prescription for them if you don't already have them.

 

[Diabeticem2]

Sorry to hear how difficult you are finding things @Diabeticem2

Just beginning to wonder on what basis they concluded you were T2 at diagnosis, since lots of factors in your clinical presentation are atypical of classic T2.

Was it mostly because you were not a child? T1 (and other types of diabetes) can come on at any age, but some non-specialist HCPs retain the misunderstanding that T1 is only diagnosed in children - when in fact 50% of cases are diagnosed in adulthood, including right up to 50s, 60s, 70s etc.

Were any checks made for diabetes antibodies at diagnosis? Was your cPeptide measured? Gliclazide works by encouraging the pancreas to release more insulin, but if your immune system has destroyed most of your beta cells, there’s nothing for it to work on.

Were you losing weight without trying before your diagnosis?

Either way, it doesn’t look like Gliclazide is working well for you. I wonder if you could ask about trying something else.

Make sure they know that you’ve significantly reduced your carb intake, and how ineffective the glic is being.

Hi. So the consultant diagnosed type 2 after antibodies came back negative and my c peptide test was showing as ‘normal’. I had ketones of 1.6 present at diagnosis and lost around a stone in 2 weeks which is what made them do those tests as they suspected type 1 but obviously due to the results decided it was type 2 in the end.

I spoke to the nurse from my GP surgery today and she’s told me to contact my specialist nurse as she believes I could go up a dose on the gliclazide to see if that does anything if not she thinks it’ll be insulin which I really don’t want but I suppose nothing I can really do about it.

 

[Diabeticem2]

@Diabeticem2 so sorry to hear about the problems you are having. While I am older than you by nearly 40 years, I too was considered a non-typical diabetic. My weight, BMI and waist were normal and my fitness levels were fine. I found that my diabetes nurse was happy to agree to other tests just in case my diabetes was caused by other issues, not least because I went through very large and rapid weight loss (circa a stone in about 1 month). It may be worth having another chat with either your doctor or diabetes nurse and explain that you are concerned that things are not improving even with the medication and see if they can do some additional tests. I had scans of my pancreas, liver and kidneys as a well as a Gastricendoscopy.

Hey! Yeah I’m going to contact them tomorrow to see what they can do as I can’t ignore that my levels are going back up again as I know it’s gonna be doing some harm in the long run.

 

[Diabeticem2]

Hi and welcome from me too.

Sorry to hear you are struggling as much as you are.

I too would be asking why they think you are Type 2 and what if any tests they have done to rule out Type 1? If they say you didn't have ketones then that in itself is not an indication. I am Type 1 (diagnosed at 55yrs old and initially assumed to be Type 2) and did not develop ketones. If it is because you had gestational diabetes, again, that is not specific to Type 2.
The tests you need to ask for are a C-Peptide test which measures the amount of insulin your pancreas is able to produce and antibody tests because Type 1 diabetes is an autoimmune condition where your immune system mistaken targets and kills off your insulin producing beta cells in the pancreas. The fact that the oral medications and dietary changes are not working effectively also indicates that you are not Type 2 and you need to push for Type 1 testing.

It would also be wise to get some Ketostix so that you can test your urine for ketones if your levels are persistently mid teens or above. Diabetic KetoAcidosis (DKA) can develop very quickly if you get to a situation where your body is not able to produce enough insulin to prevent you blood becoming acidic and toxic and you should read up on the symptoms of DKA so that you know what to look out for. It poses a much more serious and sudden risk to your health and indeed can be life threatening, than the long term risks of developing diabetic complications. Being able to test for ketones will enable you to keep yourself safe and know if/when you need to seek urgent medical attention. You can buy them online or over the counter for £5-£8 for a pot of 50 if your nurse won't prescribe them, but I would push for a prescription for them if you don't already have them.

Hi. So they did initially think I was a type 1 and ran the antibody and c peptide tests but when they came back as negative and c peptide as normal he diagnosed me as a type 2. I had ketones present at 1.6 when my HBA1C flagged as high as it did too but again saying it’s type 2.

Yeah I’ve got a glucose machine that does my blood glucose and ketones which have always been 0.1 but today are measuring as 0.5 so I’m going to keep an eye on those but I do have a cold which I know can effect them.

If I’m honest I’m not convinced fully that I’m type 2 as I’ve been on medication since before the official diagnosis while they were waiting for test results etc and it’s never really consistently managed it one day I’ll be in a good range and the next in double digits all day but I do know some type 2’s can require insulin so maybe it deffo is type 2 but I just need the injections ‍♀️‍♀️

 

[Leadinglights]

Hi. So the consultant diagnosed type 2 after antibodies came back negative and my c peptide test was showing as ‘normal’. I had ketones of 1.6 present at diagnosis and lost around a stone in 2 weeks which is what made them do those tests as they suspected type 1 but obviously due to the results decided it was type 2 in the end.

I spoke to the nurse from my GP surgery today and she’s told me to contact my specialist nurse as she believes I could go up a dose on the gliclazide to see if that does anything if not she thinks it’ll be insulin which I really don’t want but I suppose nothing I can really do about it.

That amount of weight loss in only 2 weeks does put up red flags for Type 1 so good the tests were done, are you still losing weight and was it weight that you needed to lose. Something certainly needs following up.

 

[Diabeticem2]

yeah the weight loss has deffo slowed down I went from about 14 stone to 13 and I’m now 12.4 in the end and have pretty much maintained where I am for the last month or so. Yeah hopefully I’ll have a helpful discussion with the DSN however I’ve not had the best of luck with her in the past tbh she’s very blunt and wasn’t that nice to me when we first spoke so fingers crossed she takes my worries seriously!!

 

[Leadinglights]

yeah the weight loss has deffo slowed down I went from about 14 stone to 13 and I’m now 12.4 in the end and have pretty much maintained where I am for the last month or so. Yeah hopefully I’ll have a helpful discussion with the DSN however I’ve not had the best of luck with her in the past tbh she’s very blunt and wasn’t that nice to me when we first spoke so fingers crossed she takes my worries seriously!!

Is that where you need to be, if so then the weight loss is probably not too much of a problem.

 

[rebrascora]

Good to hear that they did the autoimmune tests but I am not sure that a negative autoimmune test in itself rules out Type 1. Do you know the actual numerical results of both the C-peptide and autoimmune tests?

Your situation sounds quite similar to another member @Lucyr who was diagnosed in her early 20s I believe and didn't respond to oral Type 2 meds and produced ketones and needed insulin quite early on. She has just had a reassessment of her type after a lot of years being treated as a Type 2.

Really disappointing to hear that the DSN wasn't as empathetic and supportive of you as you would have liked. Perhaps you just caught her on a bad day last time. Hopefully she will be more helpful this time.
None of us liked the idea of needing insulin but the needles are tiny and the pens are really easy to use and the technology is improving all the time and getting your BG levels more stable and in range will make you feel a lot better. And we are here to support you and answer any questions you have and listen and understand when you get frustrated as we all do from time to time and celebrate any little successes you have as well as sympathise when things don't go quite according to plan.

 

[everydayupsanddowns]

Good to hear that they did the autoimmune tests but I am not sure that a negative autoimmune test in itself rules out Type 1. Do you know the actual numerical results of both the C-peptide and autoimmune tests?

I agree! The NICE guidelines say that diagnosis should be made on clinical factors, and that antibody tests can give false negatives. There are multiple factors in your history which align with the NICE guidance for T1 in adults.

See:

1.1.1​

Make an initial diagnosis of type 1 diabetes on clinical grounds in adults presenting with hyperglycaemia. Bear in mind that people with type 1 diabetes typically (but not always) have 1 or more of:

• ketosis
• rapid weight loss
• age of onset under 50 years
• body mass index (BMI) below 25 kg/m2
• personal and/or family history of autoimmune disease. [2015, amended 2022]

1.1.2​

Do not use age or BMI alone to exclude or diagnose type 1 diabetes in adults. [2022]

Then

1.1.4​

Measure diabetes-specific autoantibodies in adults with an initial diagnosis of type 1 diabetes, taking into account that:

• the false negative rate of diabetes-specific autoantibody tests is lowest at the time of diagnosis
• the false negative rate can be reduced by carrying out quantitative tests for 2 different diabetes-specific autoantibodies (with at least 1 being positive). [2022]

And also

1.1.8​

Take into account that the discriminative value of serum C‑peptide to diagnose type 1 diabetes increases the longer the test is done after initial diagnosis of diabetes. [2022]

Recommendations | Type 1 diabetes in adults: diagnosis and management | Guidance | NICE

www.nice.org.uk

Do you know how many antibodies were checked for? And was your cPeptide fasting or stimulated? (ie did you eat carbs before the sample was taken)

It would be interesting to know how common it is for Gliclazide to be so ineffective in newly diagnosed T2s who are eating as few carbs as you are.

 

[Diabeticem2]

I agree! The NICE guidelines say that diagnosis should be made on clinical factors, and that antibody tests can give false negatives. There are multiple factors in your history which align with the NICE guidance for T1 in adults.

See:

1.1.1​

Make an initial diagnosis of type 1 diabetes on clinical grounds in adults presenting with hyperglycaemia. Bear in mind that people with type 1 diabetes typically (but not always) have 1 or more of:

• ketosis
• rapid weight loss
• age of onset under 50 years
• body mass index (BMI) below 25 kg/m2
• personal and/or family history of autoimmune disease. [2015, amended 2022]

1.1.2​

Do not use age or BMI alone to exclude or diagnose type 1 diabetes in adults. [2022]

Then

1.1.4​

Measure diabetes-specific autoantibodies in adults with an initial diagnosis of type 1 diabetes, taking into account that:

• the false negative rate of diabetes-specific autoantibody tests is lowest at the time of diagnosis
• the false negative rate can be reduced by carrying out quantitative tests for 2 different diabetes-specific autoantibodies (with at least 1 being positive). [2022]

And also

1.1.8​

Take into account that the discriminative value of serum C‑peptide to diagnose type 1 diabetes increases the longer the test is done after initial diagnosis of diabetes. [2022]

Recommendations | Type 1 diabetes in adults: diagnosis and management | Guidance | NICE

www.nice.org.uk

Do you know how many antibodies were checked for? And was your cPeptide fasting or stimulated? (ie did you eat carbs before the sample was taken)

It would be interesting to know how common it is for Gliclazide to be so ineffective in newly diagnosed T2s who are eating as few carbs as you are.

I know they tested for 3 antibodies and all 3 came back as negative. And it was fasted as it was taken first thing in the morning after not eating all night. I’m going to see what the DSN says when I call her but the type 2 diagnosis has never quite sat right however I’ve also always had in the back of my head that I’ve not been ‘actually’ ill since the whole thing started yes I lost a lot of weight, had ketones, extreme thirst and toilet use but I’ve always been well in myself which I think is another factor in them saying it can’t be T1!!

 

[Diabeticem2]

Good to hear that they did the autoimmune tests but I am not sure that a negative autoimmune test in itself rules out Type 1. Do you know the actual numerical results of both the C-peptide and autoimmune tests?

Your situation sounds quite similar to another member @Lucyr who was diagnosed in her early 20s I believe and didn't respond to oral Type 2 meds and produced ketones and needed insulin quite early on. She has just had a reassessment of her type after a lot of years being treated as a Type 2.

Really disappointing to hear that the DSN wasn't as empathetic and supportive of you as you would have liked. Perhaps you just caught her on a bad day last time. Hopefully she will be more helpful this time.
None of us liked the idea of needing insulin but the needles are tiny and the pens are really easy to use and the technology is improving all the time and getting your BG levels more stable and in range will make you feel a lot better. And we are here to support you and answer any questions you have and listen and understand when you get frustrated as we all do from time to time and celebrate any little successes you have as well as sympathise when things don't go quite according to plan.

Not a clue they just said negative antibodies and a ‘normal’ c peptide didn’t give me any other info so I wonder if the DSN will give me the actual data if I ask?? I’m going to hold off calling until Monday so I can have a weeks worth of consistent finger pricks because if I’m honest I’ve not been doing it as much as I should be because it just irritates me seeing such a high number despite the changes and effort I’ve put in. Nothing worse than convincing myself I’m gonna be at a decent level and then testing at 15

 

[mashedupmatt]

HI @Diabeticem2 and a warm welcome from me to the forum - I concur with what everyone else has said above - your diagnosis definitely needs more investiigation - you can get false negatives on the auto-antibody test early on (I didn't on mine, thankfully, so I knew where I was almost straight away) and all of your symptoms, with changes to diet, and seeing no improvements on oral medication (They tried me on the Metformin for a while, before the test results came back) sound like classic Type 1 - Great idea keeping a record of the finger prick tests so you can give your healthcare team some really good data to look at - wishing you all the very best with it, and if you have any more questions regarding anything please don't hesitate to ask - we're all here to help each other

 

[saffron15]

@Diabeticem2 welcome to the forum. I'm a typical type 2 but since joining the forum and reading lots of posts I feel I have learned a lot about how different the types are. You must feel mentally and physically bashed and yet are trying to sort your health while parenting a toddler and doing a job too. Well done.
Given your comment about knowing the DCN before I assume you may have had gestational diabetes when pregnant.
Despite this type 1 seems far more likely. Have you found time to write down what you are eating and how you respond?
I'm on an SGLT2 which means I shouldn't go below 130 gms of carbs however I thought glicozade required carbs 2. I have an unopened pack of ketostix but fortunately haven't used yet as I have not felt unwell.

I haven't been impressed by my DCN but am trying to be more proactive. Use this forum as a sounding board. It is important you get appropriate medication and support.

 

[Diabeticem2]

@Diabeticem2 welcome to the forum. I'm a typical type 2 but since joining the forum and reading lots of posts I feel I have learned a lot about how different the types are. You must feel mentally and physically bashed and yet are trying to sort your health while parenting a toddler and doing a job too. Well done.
Given your comment about knowing the DCN before I assume you may have had gestational diabetes when pregnant.
Despite this type 1 seems far more likely. Have you found time to write down what you are eating and how you respond?
I'm on an SGLT2 which means I shouldn't go below 130 gms of carbs however I thought glicozade required carbs 2. I have an unopened pack of ketostix but fortunately haven't used yet as I have not felt unwell.

I haven't been impressed by my DCN but am trying to be more proactive. Use this forum as a sounding board. It is important you get appropriate medication and support.

Hey. You’re right there I am absolutely done in used to be able to stay awake until 1/2am easily even with a toddler but since this has all happened I struggle to get past 10pm!! No i didn’t have gestational in fact my HBA1C was amazing while pregnant haha! I know the DSN from this I only got flagged with a high level in December and got referred straight to the specialists because GP and A&E docs were so confused by my case not really being a typical of either T1 or T2.

Yeah I know glic needs carbs which is why I’m making sure I’m still having minimum 30g when taking it, I’ve been told so many times too that if I don’t eat enough carbs it could make me hypo but I’ve got no where near which leads me to believe that it isn’t working how it should and wondering if there’s more to this. Yeah I’ve started tracking on my fitness pal what I’m eating but haven’t been as on it with testing due to it winding me up seeing that no matter what I eat I go high but I’m gonna be more proactive with that to make sure when I speak to the DSN I can give her exacts etc. although I yeah I don’t particularly enjoy speaking to her as she was just really condescending and horrible the first time we spoke that I came off the phone in tears and have come off most phone calls with her in tears half due to what she said and half I guess due to being frustrated than I’m not improving :’(

 

[Leadinglights]

Hey. You’re right there I am absolutely done in used to be able to stay awake until 1/2am easily even with a toddler but since this has all happened I struggle to get past 10pm!! No i didn’t have gestational in fact my HBA1C was amazing while pregnant haha! I know the DSN from this I only got flagged with a high level in December and got referred straight to the specialists because GP and A&E docs were so confused by my case not really being a typical of either T1 or T2.

Yeah I know glic needs carbs which is why I’m making sure I’m still having minimum 30g when taking it, I’ve been told so many times too that if I don’t eat enough carbs it could make me hypo but I’ve got no where near which leads me to believe that it isn’t working how it should and wondering if there’s more to this. Yeah I’ve started tracking on my fitness pal what I’m eating but haven’t been as on it with testing due to it winding me up seeing that no matter what I eat I go high but I’m gonna be more proactive with that to make sure when I speak to the DSN I can give her exacts etc. although I yeah I don’t particularly enjoy speaking to her as she was just really condescending and horrible the first time we spoke that I came off the phone in tears and have come off most phone calls with her in tears half due to what she said and half I guess due to being frustrated than I’m not improving :’(

What might be useful to both you and them would be some strategic testing of your blood glucose with a food diary of what you eat and drink. I know it might be a phaff but may enable you to be on a better medication regime. Test before you eat and after 2 hours and note the amount of carbs you have.
Are you taking your gliclazide 30 mins before you eat as that is supposed to give your body a head start with producing insulin to cope with the carbs in your meal.

 

[Diabeticem2]

What might be useful to both you and them would be some strategic testing of your blood glucose with a food diary of what you eat and drink. I know it might be a phaff but may enable you to be on a better medication regime. Test before you eat and after 2 hours and note the amount of carbs you have.
Are you taking your gliclazide 30 mins before you eat as that is supposed to give your body a head start with producing insulin to cope with the carbs in your meal.

Yeah I started making a diary of it all this past weekend and am going to continue to do so for the rest of the week before I call, I feel rubbish with the high levels but I’ve felt like it for weeks so another one won’t hurt haha. Yeah I’m taking it 20 mins prior as per the consultants instructions 🙂